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Ask CancerCare

Liz Ezra, LMSW, Pancreatic Cancer Program Coordinator

January 2009

This Month's Topic: Coping with Pancreatic Cancer

Featured Expert: Liz Ezra, LMSW, CancerCare's Pancreatic Cancer Program Coordinator

Q. I am a 41-year-old woman and was diagnosed with pancreatic cancer last month. I want to know if the pain I am experiencing worsens over time or does it remain at this level? It's mostly in my back. How do I manage it?

A. Unfortunately, pain is very common with a diagnosis of pancreatic cancer. The good news is, often the pain lessens as the chemo and/or radiation works to shrink the tumor. Discussion with your oncologist or radiologist must include how you are managing your pain. If your doctor does not bring it up, then make sure you advocate for yourself and start the conversation. There are now a variety of pain medications that can effectively lessen your pain without debilitating drowsiness or grogginess.

Because pain can be difficult to characterize or describe, it might be helpful to have friends or family offer their assessments as well. It's always a good idea to bring someone with you to any appointment; another set of ears can help alleviate any confusion when you get home. I recommend that you bring a list of questions to the appointment and have someone write down the doctor's responses. People sometimes even bring a recording device to assure accuracy; just make sure to ask the doctor for permission to tape the conversation.

As noted in a past Ask CancerCare feature devoted to pain management, here are some helpful tips:

Q. My husband was recently diagnosed with pancreatic cancer and I'm frightened by all the information I'm finding on the internet. Is there a better way I should be looking for help?

A. After being diagnosed with pancreatic cancer, one is often faced with numerous questions and many decisions to make in a short amount of time. While pancreatic cancer can be a difficult diagnosis, much progress has been made. Doctors have established a standard of care protocol for people able to have surgery (known as the Whipple Procedure) as well as for those for whom surgery is not an option.

Your intuition concerning the internet is right on—there is a good deal of misinformation out there. The following are a few reliable websites I urge you to visit:

Pancreatic Cancer Action Network (PanCAN) is an advocacy organization that provides helpful information about treatment options, specialists, clinical trials, support groups, diet and nutrition. The group is currently lobbying for additional funding for research and more visibility for pancreatic cancer.

The Hirshberg Foundation for Pancreatic Research and the National Cancer Institute's Cancer Information Service can provide accurate diagnosis and treatment information. You can also check out the NCI's fact sheet, How To Evaluate Health Information on the Internet.

CancerCare's Telephone Education Workshop, "Medical Update on Pancreatic Cancer" is another helpful resource. You can listen to this workshop by calling 1-800-625-5288 (when prompted, enter the access code 1269425). Each of our telephone workshops lasts about one hour and features prominent health care professionals. You can also find useful information in our Connect® Booklet, Pancreatic Cancer: Your Guide to the Latest Research and Treatments (Highlights from ASCO 2008) PDF.

 

Liz Ezra, LMSW is the Program Coordinator for Pancreatic Cancer at CancerCare. She provides individual and family counseling for pancreatic cancer clients and their loved ones by telephone, online and in-person as well as facilitates support groups.

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